Hi,
I was on chemotherapy similar to your mum’s. I had daratumumab instead of cyclophosphamide.
I have not had an SCT for many reasons. One of those reasons is simply that chemo has improved so much now that there is little to gain further from having an SCT. This is according to my consultant who is an authority on MM. I have also read research papers (my background is in science – but not medicine) which also indicate this.
I went into remission about a year ago, and am taking maintenance chemo.
Please do not worry about your mum not having an SCT. Whilst I obviously have no idea as to the specific reason, your mum may well have extensive remission without it.
Regards
Rabbit
Hi Grandmat, welcome to this forum.
Could you please more information about the clinical trial that your husband has been on? Many of us are interested in possible future treatments.
A lot of us MM patients, whether or not on a clinical trial, don’t have a break as even if/when in remission, we may be on maintenance chemotherapy. This may mean lower and/or less frequent doses, but it helps to delay the MM from coming back.
Regards
Rabbit
Hi,
I will give the best answer that I can on this, but must emphasise that I am a layman with MM, not a professional.
Although paraproteins are a classic indicator of MM, an unmeasureably low paraprotein level could still be consistent with a level of cancer cells that could be further reduced.
There are different kinds of MM. For example, mine is kappa light chain MM.
During chemo treatment (which started in January 2023), my paraproteins went down to immeasurable levels in early March 2023 but my kappa light chains were still continuing to go down before stabilising in late March 2023 (one cycle of 3 weeks later). Therefore it took that extra cycle for the cancer cells to go down to negligible levels (people are supposed to have kappa light chains so mine have stabilised at 25 to 30 from a level of over 3,000 when I was diagnosed).
Therefore, I suggest getting info on your husband’s MM type (if you don’t know it already), and how the blood test reading for that type compares to a normal level. Paraprotein levels are not that sensitive a test.
Regards
Rabbit
Hi Nick,
I think my experiences come in the ‘bad’ category.
The first time I had Zometa, I was fine for 2 days, then as I parked to go to the gym, I felt all energy drain from my body in an instant. I turned around and went home to bed.
Since then, I either get this loss of energy starting 2 or 3 days after Zometa and going on for around 2 days, or I get the ‘flu-like’ symptoms which my nurse warned me about (but worse than they implied).
Let’s just say that I was originally due to get Zometa every 28 days. After I pushed back on this (because the side effects were distinctly unpleasant), this changed to every 3 months (or to be pedantic, every 3 x 28 = 84 days).
At least I know to anticipate feeling horrible then, so I plan accordingly. My next Zometa is due next week, so I am not planning anything more strenuous than reading and watching TV a couple of days later, as I probably won’t feel able to do much.
Hi cb1sara,
When I started chemotherapy, the advice that I got on weight changes was to just eat according to appetite unless there was a lot of weight loss (then the high calorie milkshakes that I mention above can be prescribed).
My impression of the situation is that:
– Dexamethosone often increases appetite and therefore weight.
– Patients often don’t exercise as much as before, also increasing weight, but
– The chemo can cause nausea and a loss of appetite, and so weight loss
– An SCT can cause very little appetite for a long time, so a lot of weight loss.
In short, weight can often bounce up and down quite a bit over time. As you say that you are coming towards your SCT, putting on a few pounds at this stage sounds like good situation to be in.
My personal opinion is that weight is not important compared to everything else you and your body are going through. You’ll get through this!
Rabbit
Hi Anne,
Taking your questions in turn:
May I ask if you had STC or is your treatment only chemotherapy?
You are welcome to ask – I am an open book on this forum! However, as any member of the public can read my posts, I prefer to stay anonymous and call myself “Rabbit”. Otherwise friends, work colleagues etc could come across some very personal information about me.
I have not had an SCT (stem cell transplant). Reasons:
– I have a comorbidity (something else wrong with me): a dodgy heart. An SCT would put a bit of a strain on my heart, so my haemotologist and cardiologist discussed me and agreed that it would be best if I didn’t have an SCT.
– I have had my stem cells taken (it’s a process like a few hours of kidney dialysis) and frozen, but they were only able to take enough for one SCT. Lenalidomide (also known as Revlimid) is a chemo drug which I take: after a few months taking it, it damages the stem cells. As far as I understand it, that one dose is all I have got (although someone in my family may be a match and be able to give me stem cells).
– The initial chemotherapy that I had went unusually well, therefore less need for an SCT in the short term.
– There is recent research indicating that an SCT is less necessary than it used to be, simply because the chemo drugs have improved so much.
All the above is based on my own experience and (on the ‘recent research’ point) info from my consultant. The most important thing is that you talk to your consultant. I would also suggest reading up (this might not suit everyone but my background is in science – but NOT medicine), thinking it through and discussing with family and/or friends.
“… not sure how often chemotherapy is administered once someone is in remission.”
Personally, I am on a 4 week cycle of maintenance treatment during remission.
Day 1: Daratumumab injection and dexamethasone.
Day 2 – 22: Lenalidomide.
Day 23 – 28: No chemo.
I also take Vitamin D, Aciclovir and Lansoprolole daily (all presecribed)
Can I also ask if life has returned to a near normal for you? Thinking of infections, social distancing, energy levels and anything else!
Overall, I would call it a new normal. I have semi-retired due to fatigue (see below), although I had been starting to think that way anyway. Focussed more on enjoying life and family. Been on a few holidays in remission.
I have had a couple of infections (gastroenteritis and a horrible cough that took weeks to clear).
Social distancing isn’t difficult for me as I have been working from home since the first Covid lockdown, but I do day to day things (shopping, eating out, going to the gym etc). I am much more cautious about big groups of people (I wear a mask).
Energy levels have generally been the biggest chemo side effect for me: I routinely had a nap during the day until remission started.
One thing that I would specifically mention is exercise: I used to be a gym fiend, but the chemo made that impossible. I still walked as much as I could, as the evidence is that exercise is great for physical and mental health. On going into remission, I restarted in the gym from a very low base (warning: this was only after talking to my consultant and a physiotherapist about what exercise I could handle without risking bone fractures).
Regards
Rabbit
Hi Anne,
Welcome to this forum. Although the diagnosis of myeloma, and what it means, is pretty traumatic, many of us have been there (and most of the rest of us are the family and friends of those with myeloma).
The short answer to your question is: using the Revised International Staging System, you would be in Stage 2 or Stage 3.
From cancer.net (https://www.cancer.net/cancer-types/multiple-myeloma/stages
Revised International Staging System)
“The Revised International Staging System (R-ISS) is now used more commonly to classify multiple myeloma. The R-ISS is based on data collected from people with multiple myeloma from around the world. The system has 3 stages based on the measurement of serum albumin, lactase dehydrogenase (LDH), and serum beta-2 microglobulin (β2-M) and whether high-risk chromosomes are found using the fluorescence in situ hybridization (FISH) test (see Diagnosis).
Recent efforts have been made to further classify myeloma based on patterns of gene expression in myeloma cells. This is an ongoing area of research.
Stage I: All of the following apply:
β2-M less than 3.5 mg/L
Serum albumin of 3.5 g/dL or more
Normal LDH
No high-risk chromosome changes in myeloma cells found by FISH test
Stage II: Not stage I or stage III.
Stage III: β2-M is more than 5.5 mg/L, plus one of the following:
Myeloma cells have high-risk chromosome changes found by FISH test
High LDH”
However, Anne, the treatment is the same: chemotherapy and typically (not always) a stem cell transplant.
I was diagnosed with Stage 3 myeloma (with 2 genetic mutations) in December 2022. I have been in remission for 10 months now and am enjoying life!
Happy, of course, to discuss further.
Regards
Rabbit
Hi cjleeds,
You mentioned that you have lost over a stone in weight.
I don’t know if this will provide any assurance, but in terms of weight:
– From the date of diagnosis, I lost about 15kg = 33 pounds in weight. (I had also lost weight before diagnosis, but wasn’t tracking it).
– Starting a month or two into remission, I started having what I call ‘hunger attacks’. I frequently have two breakfasts or lunches, as my body sometimes just demands that I have high calorie food. So far I have put on about 5kg = 11 pounds.
– High calorie milkshakes can be prescribed. They come in powdered form, in sachets: just add milk.
Regards
Rabbit
PS To anyone unfamiliar with the abbreviations:
SCT = stem call transplant
D = Daratumumab = Darzalex
R = Lenalidomide = Revlimid
d = dexamethasone
Hi Squirrel,
In March 2023, I had a routine eye test. The optician found that I had early signs of cataracts. Routine for someone like me, in my 50s, so it didn’t seem anything to do with MM (my treatment started January 2023). Therefore it was just something to monitor for the long term.
By October 2023, my vision had become noticeably blurred in both eyes. It seemed to have come on suddenly*. I frankly panicked: it was bad enough having high risk MM without one of my senses getting dramatically worse. I was seriously worried about going blind. My consultant referred me to a private opthalmologist specialising in cancer cases (cost £300 for the consultation). She diagnosed that the dexamethasone had made the cataracts far worse.
*The opthalmologist explained that my brain had been compensating for the deteriorating vision until it all became too much for my brain.
Now that I knew that the medical situation was relatively routine, even though the cause was not, I calmed down and had cataract operations. There was the complication that I needed infusions of platelets just before the ops, but it was all straightforward other than that. In the process, my shortsightedness has been corrected: I no longer wear specs!
Regards
Rabbit
Hi gc,
Specifically on Zometa, when I finally started getting it (they forgot until I reminded them!), I had the following side effects a couple of days after each dose (every 4 weeks):
– I had such a loss of energy that I could barely walk (thankfully that reduced after the first couple of doses).
– I have symptoms resembling the worst kind of flu.
I don’t have bone lesions: my many years of lifting weights has given me strong bones, despite being hypercalcaemic when I was diagnosed. I asked/begged my consultant to stop the Zometa (this was before I was fully aware of the importance of preventing lesions in future).
We came to a compromise, as my consultant said that there was ‘wriggle room’ on treatment frequency: I now get Zometa only every 12 weeks. I still get the side effects, but at least they are no more frequent than necessary.
Regards
Rabbit
Hi Twinz,
I have been in remission for 10 months now.
I think that there are 3 parts to this:
– Level of immunity
You have probably got up to speed on the relevant jargon: platelets, neutrophils etc. My understanding, as someone with MM, is that the level of neutrophils is the most important in terms of the risk of bacterial infection: this seems to be the bigger danger compared to viral infection. However, I am by no means saying that viral infection is not important. Therefore: how many neutrophils do you have? (other parts of the immune system also being relevant).
I have blood tests every 4 weeks and I am warned to be more cautious when my neutrophils are especially low.
– Quick wins
You mention avoiding busy places and wearing a mask. Then there is also:
– eating a neutropenic diet (e.g. no raw meat or fish)
– washing hands frequently
– avoiding people known to have infections.
– keeping up to date with vaccinations
None of these are particularly difficult to do, and can significantly reduce risk.
– Attitude to risk
An analogy: when it comes to savings and investments, some people are very cautious and put every penny in the bank. Some take more risk, by taking punts on the stock markets of (say) Vietnam and Georgia, knowing that this is more risky (i.e. you could lose money) but it could bring more reward. There is no right or wrong in this, but some people take more risks then others.
Likewise, once unnecessary risks have been removed (the ‘quick wins’ such as those above), it depends on your own attitude. It is perfectly reasonable to be cautious and lead a low risk lifestyle: I get the impression that that is what you are doing. My lifestyle is more risky: since going into remission, I have had a number of holidays, saw my youngest graduate from university, went to a pantomime in London’s West End…
Have I had infections? Yes! I came back from one holiday with gastroenteritis and from another with a cough that took weeks to clear up. I don’t regret it, though. There will come a time when I fall out of remission, and after that there could be tough times ahead in terms of chemo side effects, bone pain etc. One thing that is going to help me cope is having fond memories of the sightseeing, local cultures, and spending time with family while doing all this. My life, my choice. It also means that they have fond memories of me enjoying the local cuisine, “Dad dancing” in public (I am unembarrassable :-)), heart to heart conversations etc.
Therefore, when you ask “will it [the fear of infections] eventually improve”, I suggest that it is up to you.
If you want to deal with this fear – and I did go this stage during the first few months of chemo – I suggest going a bit outside your comfort zone, getting used to that, then a bit further etc. Happy to discuss further.
Regards
Rabbit
Hi Anne,
When the UK was in the EU, regulatory approval was done by the European Medicines Agency (EMA): ironically, it was based in the UK.
Post Brexit, the UK set up its own regulator, the Medicines and Healthcare products Regulatory Agency (MHRA).
This paper indicates that the MHRA fell behind the EMA in approvals in 2021:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9797847/
Note that Abecma, one of the drugs mentioned, is a CAR-T treatment for myeloma.
Medical charities, including Myeloma UK, did ask the UK government to use the EMA for UK regulatory approval before Brexit actually happened. Didn’t happen.
Regards
Rabbit
Hi Anne,
The situation is better than that.
CAR-T and bispecific antibody treatments have already been approved in the US and the EU.
Going off topic, I could curse Brexit. The UK regulator is taking its time to approve new MM treatments.
My reading of things is that CELMoDs are further off, with dendritic vaccines way off on the horizon. I would, of course, welcome being corrected on any of this.
Regards
Rabbit
Hi Anne1,
I know that hearing things like this can be depressing.
Here are a few thoughts:
1. “Average”
2 years sounds like the median time in remission. That means that it is less than that for 50% of patients, and more for the other 50%.
In the second group there are patients who stay in remission for far more than 10 years.
The word average in day to day life is the total of all the remission times of a group divided by the number in the group (this is otherwise known as the mean). That is more than the median.
MM researchers use medians in measuring how effective a treatment is so that they can assess things when it has stopped working for half the patients. If they used the mean, they would have to wait much longer, for it to fail for the very last patient. That would delay the roll out of a new treatment: bad for patients, bad for pharmaceutical firms.
2. Further treatments
When one falls out of remission, there are many other treatments out there. Sometimes these are more effective for the patient than the first “line” (the initial chemo followed by the SCT).
3. Future treatments
MM treatments have improved enormously in recent years, and there are more entire types of treatments on their way: CAR T, bispecific antibodies, dendritic vaccines, CELMODS…
Even if someone only stays in remission for a couple of years after the SCT, that and the other treatments already approved can buy time for these new treatments to be rolled out in the UK (CAR T and bispecific antibody treatments have already been approved in some other countries).
Regards
Rabbit
Hi Nick,
Side Effects
The side effects of the chemo vary enormously from one person to another. Therefore it is difficult/impossible to say how it will be for you.
Having said that, I will mention a few common side effects and related tips.
1. Fatigue and sleeplessness.
Dexamethasone can have many “interesting” side effects, but one of the biggest is that it can mess up sleeping patterns. I only read recently that “Dexy’s Midnight Runners” got their name from taking dexamethasone to party at midnight!
At the same time, fatigue is normal. If you need a daytime nap, go right ahead.
2. Weight
The chemo can cause loss of appetite and nausea. Somewhere on this forum, one or two people mention that rice pudding, custard and yoghurt go down well. I independently discovered that too.
Dexamethasone can also increase appetite (in the short term).
Don’t worry about your weight (unless you are losing a lot – you can be prescribed high calorie drinks).
Now that I am in remission, I often have ‘hunger attacks’ my body just decides that it needs an extra meal to put weight back on).
Take Control
It’s great that you have been reading up. Apart from anything else, doctors are not gods.
A couple of personal examples:
MM leaches calcium out of the bones, which can cause fractures. To prevent that, treatment normally includes a bone strengthening drug such as Zometa. My consultant simply forgot to start giving me Zometa – I had to remind him!
I felt that my eyesight was deteriorating. My consultant either didn’t believe me or thought that was nothing to do with MM. I saw an opthalmologist: the chemo had damaged my eyesight (to be fair, this is unusual). I have had surgery and now my eyesight is the best that it has ever been!
Family and friends
If you have them and they live close by, this is a time when help from loved ones makes all the difference. At my worst, I was struggling to do much, such as household chores. Family in particular made all the difference.
At the same time, and I don’t understand this, I lost friends. Whether people don’t know what to say, or it is a primeval fear of disease, at the first mention of cancer some people just didn’t want any more to do with me. This is a time when you find out who you can rely on.
Regards
Rabbit
